Mom is all settled in to her new room. She was sleeping when I left. I want to be there when she wakes up, but since it could be 15 minutes or several hours, I just don't know when that will be. I came home to get a few things done and make dinner. I'll go back later. Going through all her clothes and writing her name on the labels of the ones I sent made me feel like I was sending her to camp (something I did for my 9-year-old son in July). Buying her twin sheets, comforter, shower caddy, and bedside table made me feel like I was setting up her college dorm room (something I'll be doing with my 18-year-old son in a few weeks).

The facility is clean, lunch looked appetizing, and the staff were all really nice and seemed to genuinely like the residents. The residents are pretty sweet, too. They were sitting in a circle batting around a giant balloon when we got there. Mom joined right in and seemed to be enjoying herself. Two of the ladies wandered into Mom's room while we were setting it up. One was just confused and wanted us to help her find something. The other one wanted to visit and see what was going on. After lunch they went on a "scenic drive", but Mom was ready for a nap by then so didn't go.

The move happened not a moment too soon. Mom kept Dad up all night the night before last and then wouldn't sleep during the day, either. Every five minutes or so, she wanted to get up and walk from room to room as if looking for something. She'd open drawers, look in her closet, etc. He had to follow her, of course, since she falls so much. She kept going to her suitcase, unzipping it, and pawing through all the clothes as if she was looking for something. By the time I got there mid-afternoon, my dad was exhausted. Then last night she slept alright until she wet the bed at 4:00 a.m. After that she and Dad didn't get to go back to bed. He stripped the linens to wash, and when I got there at 9:00, he was already a wreck. While I was finishing the packing in the back of the house, she escaped out the front door without my dad realizing it, and I found her on the ground right in front of the house. She was o.k., though. It just reinforced that we were doing the right thing by moving her to a safer place.

Now I have to put on my teacher hat. School starts tomorrow. I'm not as ready as I'd like to be, but since I'm one of those people who OVER prepares, I'm ready enough. I do look forward to seeing my students. Also, my administration is willing to hire someone to cover for me one day a week, so I'm going to four days. I'm not looking forward to the pay cut, but I think finding some balance and quiet spaces in my life is more important right now than a bigger paycheck.

Mon Sep 05, 2011 7:05 pm

JeanneG

Joined: Fri Dec 31, 2010 3:07 pmPosts: 1039Location: Minnesota

Re: Moved my mom to assisted living today

Best of luck to you. If careful preparation and thoughtful realistic expectations count for anything, you and mother and your father should do just fine!

_________________Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Mon Sep 05, 2011 7:56 pm

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: Moved my mom to assisted living today

Glad your mom seems to have adjusted pretty well so far. Don't be surprised if/when she starts asking to go home, though. There are lots of posts on here about LOs wanting to go home, so you may want to see the CG responses to help lesson the trauma to all when that happens, and it is likely to happen. I'm glad you like the place, and reducing your work time to 80% will help bring a little more balance into your life. I hope you and your dad can spend a little time taking care of yourselves now that family members no longer have to be "on" 24/7. Lynn

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Mon Sep 05, 2011 8:06 pm

gailshef

Joined: Tue Feb 23, 2010 10:32 amPosts: 215Location: Kalispell, MT

Re: Moved my mom to assisted living today

Let's hope your mom's transition continues well as did that of my husband. Also, remember than when home comes up, like hallucinations/sleep/everything else Lewy does, it may not mean what we think it does. I spent only 6 months with my husband in his ALF, but observed his and others' takes on this. Generally, I found that redirection would help. Since I was most often there in the afternoons (and stayed and ate supper), I could distract any sundowner or other thoughts with something like "It's only an hour till supper. I'm hungry and we aren't going to do anything till after supper."

A couple of times early on, I would find my husband packed and ready to go--but he wasn't sure where.

Sometimes redirection is a timing thing--they will forget. I guess my message here is while you want to address their concerns, you have to be aware that they don't necessarily think of them as normal individuals would. Part of our challenge as caregivers is to bridge the gap between normal and Lewy-world as expressed by our individual LOs.

Mon Sep 05, 2011 9:30 pm

katelu

Joined: Tue Dec 29, 2009 2:28 pmPosts: 464Location: Minnesota

Re: Moved my mom to assisted living today

You are so smart for cutting your schedule back and finding some time for yourself. I'm sure it will help you keep your own sanity.

Kate

_________________Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]

Sounds like you've found a great place for your mom and gotten her settled in. Hope things continue to go well.

Thu Sep 08, 2011 10:47 pm

SandwichMom

Joined: Fri May 28, 2010 4:46 pmPosts: 119Location: Salem, Oregon

Re: Moved my mom to assisted living today

My mom has been in assisted living since Labor Day weekend. Since then she's become almost entirely incontinent, she needs help getting food onto her fork, she sleeps most of the time, she cannot walk unassisted at all (before we just had to be nearby in case she stumbled), and her ability to communicate has diminished to next to nothing. The caregivers at her assisted living facility have been great, and she has visitors, family and friends, every day. Nevertheless, my dad asked me today what I thought about moving her back home with him. He thinks that she is ready for a wheelchair so he won't have to worry about her falling anymore, and since she sleeps most of the time, he doesn't think he needs a full-time caregiver for her. He is in his late 70's with his own health issues, so the idea really worries me. Of course, I'd love her to be home for her last months, but I'm so concerned it will be too much for my dad. It was too much for him before, but mainly because she kept trying to walk and fell all the time. She can't really get up by herself anymore, so he thinks he no longer has to worry about that.

It sounds like she's in a good spot, where the caregivers are good and family is visiting. And your dad doesn't have to do the back-breaking, exhausting working of hands-on caregiving. I wouldn't change her environment again. Perhaps that's the angle you can take with your dad (eg, "every time we change mom's environment, she is likely to decline some")??

Sun Oct 30, 2011 12:08 am

cdw

Joined: Fri Nov 05, 2010 11:30 pmPosts: 318Location: southern cali

Re: Moved my mom to assisted living today

can you dad visit each day for as long as he wants.... eat lunch and dinner there with her?? it does sound as tho she is in the right spot and is comfortable.. im sure he is missing her. just trying to think of a way they can spend more time together, but you know she is secure and your dad is not over doing.. best wishes...

Dad visits her three times a day, trying to be there when he thinks she'll be awake (usually around meals, but sometimes she sleeps through them). After her evening meal, he puts her to bed each night--changes her Depends, puts her pajamas on, rubs her back as she takes 10 minutes to brush her teeth, puts her CPAP on, then tucks her in with a kiss and waits for her to fall asleep. Before Mom moved to assisted living, I worried about the two of them all the time. It's been an enormous relief to me that she's at a place where there are plenty of trained caregivers around and a nurse on site. I dread the return of the constant state of worry I was in--keeping my phone next to me at all times for the inevitable calls I'd get from Dad when she fell or he was worried about her. If he brings it up again, I'll remind him that if it doesn't work out, it's yet another move for her, and she might not get her private room back. Maybe if he insists, I'll suggest that he just bring her for a visit for a couple of nights so that he can see what it will be like. That would probably be enough to convince him that she should stay there. The downside is that Mom has seemed to accept where she is, and it might be hard on her emotionally to go home for a short time only to be taken right back there.

Sun Oct 30, 2011 6:18 pm

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: Moved my mom to assisted living today

I think the conventional wisdom is that 'visits home' are a bad idea.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Sun Oct 30, 2011 7:18 pm

SandwichMom

Joined: Fri May 28, 2010 4:46 pmPosts: 119Location: Salem, Oregon

Re: Moved my mom to assisted living today

Well, that's what I think, but if he's going to bring her home anyway, I'd rather he keep her spot reserved at the facility so that if it doesn't work out (which I think is inevitable), she will still have her room. I don't think it would take more than a week before he'd be ready to bring her back. Maybe I just need to be more blunt with him. I just hate feeling like I'm always the negative voice telling him what he doesn't want to hear.

Can someone else give him this message? A family friend, a religious person, an MD? You might also talk with the social worker at the facility, if there is one, to strategize for your conversation with your dad. I think if you come at it from the point of view of overwhelming concern for both of them, then there's a chance he can accept it.

Mon Oct 31, 2011 4:48 pm

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: Moved my mom to assisted living today

Perhaps if you make it clear that any move or change in her daily routine is going to cause a decline in her condition, he might be less eager to bring her home, even temporarily. In other words, it's for her benefit rather than his. At least it might work. And it's true, as well.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Mon Oct 31, 2011 5:56 pm

JeanneG

Joined: Fri Dec 31, 2010 3:07 pmPosts: 1039Location: Minnesota

Re: Moved my mom to assisted living today

It sounds like Dad has chosen to do plenty of hands-on caregiving in the present setting. But there is the reassurance that if he gets sick or is having a bad night (or is having a good night at a party), someone else will put Mother to bed. Someone else is seeing to other caring tasks. He can still do what he can do and wants to do. That seems ideal to me.

I hope that you can convince Dad that this is the best solution under the circumstances.

If you can encourage the steady stream of family and friends visits to continue, that might be as reassuring to Dad as it is for Mom.

Hugs to you. Your role is definitely not easy!

_________________Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

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